New program helps young adult stroke survivors realize their life goals
Stacey Wilson, 29, tried to ignore the persistent headaches and jaw pain that she had been experiencing for two full weeks. It was November, 2015 and her life was busy and stressful - she had recently finished her Master’s Degree and was working at her family restaurant. But one morning, Wilson awoke at 4am unable to move. She was rushed to her local hospital and quickly transferred to Tufts Medical Center, where doctors found that a tear in her carotid artery had allowed a blood clot to travel to her brain, blocking blood flow. Wilson was diagnosed with acute ischemic stroke.
“The neurosurgeon made the decision to operate immediately and I’m convinced that saved my life,” said Wilson. “I spent a week in the hospital, and when I finally went home, it was a big adjustment. It was scary. I wasn’t sure I could function like I used to.”
A stroke can have significant, permanent effects on speech, vision, swallowing, and nerve and muscle function. However, the vast majority of stroke attention is afforded to senior citizens, the age group most commonly affected by stroke. There is very little stroke education or support available for younger adults, despite the fact that their stroke symptoms may be more subtle and more difficult to detect. As a result, many young adults may not recognize stroke symptoms or even understand that people their age can have a stroke. Director of the Comprehensive Stroke Center Lester Leung, MD, is aiming to change that.
“Each year, ten to fifteen percent of new strokes in adults occur in people between the ages of 18 and 50. However, about one-quarter to one-third of all stroke survivors are adults in this age range,” said Dr. Leung, the founder of the Stroke and Young Adults (SAYA) Program at Tufts MC. “Their lives change dramatically after a stroke. It’s much more difficult to come to terms with potentially severe, lifelong disabilities when you have your whole life ahead of you. There are feelings of fear and loneliness that are not adequately addressed by referring these patients to a support group at a nursing home, surrounded by people decades older than them.”
An Innovative Care Plan
With the goal of catering to this underserved patient population, Dr. Leung founded the SAYA Program shortly after coming to Tufts MC in July 2015. The first-ever program of its kind, the SAYA Program goes far beyond other offerings for young adult stroke victims that focus solely on rehabilitation and adaptation to disability. The SAYA Program has a three-part emphasis. First, patients receive a comprehensive medical evaluation in the Stroke and Cerebrovascular Diseases clinic. Stroke experts evaluate each patient to fully understand why they had a stroke, estimate the risk of recurrent strokes (especially for causes of stroke that are more common in the young adult population), and diagnose other late complications of stroke, including epilepsy, cognitive impairments, movement disorders, depression, and anxiety. The diagnostic process often includes other specialties that work with young adults with stroke, including Neurosurgery, Cardiology, Hematology and Rheumatology.
After the initial evaluation, the stroke specialist works closely with care team members in a wide variety of specialties – including Neuropsychology, Physical Medicine and Rehabilitation, Speech and Language Therapy, Occupational Therapy, Physical Therapy, Movement Disorders and more - to optimize stroke recovery, including mapping out a tailored plan to help each individual patient get back on his or her feet, return to work and achieve life goals.
“Dr. Leung is amazing,” said Wilson. “He is an incredible listener and takes time to really understand his patients’ struggles and goals. With the SAYA Program, your care doesn’t end after the initial therapy and rehab – the specialists follow up long term and make you feel unique and special.”
Finally, the SAYA Program offers a social and educational support group for young adults with stroke that is open and available to them long after the initial diagnosis and treatment phase. The group organizes periodic events to give patients a chance to be around other people of a similar age with shared experiences. The SAYA Social Support group holds events every two months, which may include anything from candlepin bowling and mini-golf to painting classes and visits to local restaurants.
“The social aspect of the program is really fun,” said Wilson. “Everyone comes together – stroke survivors, doctors and many people also bring their friends and families. It’s really great to meet people with similar stories, challenges, hopes and fears. There are people of all different levels of recovery, ability and mobility and we can all help encourage and motivate each other.”
A Slow But Steady Recovery
Today, Wilson had made great strides in her recovery, but she is still not 100 percent – muscle spasms make handwriting challenging and she experiences some short term memory loss and occasional difficulty finding the right word to say. She couldn’t work or drive for eight months after her stroke and it took even longer to fully regain her ability to read. Wilson started working full time again in January 2017, but hasn’t yet regained the same strength or endurance that she used to have.
“It took me almost a year to feel like myself again,” said Wilson. “And it has been tough road because my friends and family want to see me get back to normal very quickly. My world was disrupted in what should be the prime of my life. I’m slowly working my way back to where I want to be, but it takes a while.”
“Stroke can happen to anyone at any time, and there are a lot of people out there, like Stacey, who still have long lives to lead after a stroke,” said Dr. Leung. “We need to support them, guide them and help them past the initial frustration and despair. They are capable of accomplishing much more than they know or expect and can realize the meaningful, fulfilling lives for which they hope and dream. The SAYA program can help them get there.”
For more information on the SAYA Program, or to make an appointment, please call 617-636-5848.
Recognition and Expansion
Since its inception, the SAYA Program has gained international attention: it was recognized as an exemplary model of care for young adults with stroke in the United States at the World Stroke Congress in the fall of 2016, and Dr. Leung presented the program at a plenary session at the third annual Young Stroke 2016 conference in Jacksonville, Florida. The SAYA Program has grown quickly in number of patients served and has reached patients from downtown Boston to Michigan. The program also has a new stroke coordinator on staff, and some of the medical practices are going to expand to other physicians at Tufts MC - currently, all the SAYA program patients are seen by Dr. Leung, but patients seen by other neurologists will also benefit from the program’s offerings.
Top Risk Factors for Stroke in Young Adults
- Patent foramen ovale (a hole in the heart that occurs during fetal development)
- High blood pressure
- Tobacco use
- Marijuana use
- Estrogen-containing contraceptives
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